Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Dear Eppie, I am so sorry to hear of Stan’s passing. Our thoughts and prayers are with you, the family and friends. Please, let us know if there is anything we can do to help you. Barb in Texas -----Original Message----- Stan finally lost the battle with PSC on Mar. 6. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Dear Eppie, I am sorry to hear that after a valiant battle with PSC Stan has passed on. It seems so unfair that with a Meld 7 not being high enough that it still can take one's life without having a chance for transplant. My thoughts and prayers are with you, his family and friends who must now accept this sad reality. I hope good memories can help ease the pain of this loss. Please take care of yourself and know that we are here for you. Joanne (mom of Todd, 19, psc 01, Crohns 02, tx twice 03, recurrent psc 05) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Eppie, I am so sorry to hear of the loss of Stan. I have to believe that he is now at a place of peace and with out. I will pray for you and others who loved Stan. Being the parent of a child with PSC I thank you from the bottom of my heart for suggesting donations go to PSC Partners; it gives those of us still struggling with this terrible disease hope. LINDA (Mom of Suzanne, 16; IBD 1/04; PSC 3/04) From: [mailto: ] On Behalf Of vel2eite Sent: Saturday, March 18, 2006 1:11 PM To: Subject: Stan Breite's death Stan finally lost the battle with PSC on Mar. 6. We played the Catch 22 game for 7 years--not morbidly sick enough to get a liver and finally so sick that Hospice (thank goodness for their care!) was the only recourse we had! He was diagnosed (at a very fit age 70!) in 1999, evaluated for transplant in 2003 and placed on the list in San Diego, CA that year. Low MELD of 7--which was never changed, despite continuing decline from that point on. Evaluated in 2004 at Indiana Unversity Hospital and failed to make their list--not nearly morbid enough! The whole procedure is so ironic! I was his life partner for the past 34 years as well as his caretaker throughout these last terrible months. We walked this slow death march together and just kept plodding along, somehow ever hopeful that he'd get sick enough to reach the brass ring! A nightmare journey! You'd think that with all this time to get ready for the terrible day, I'd be able to handle it with less pain---but it hasn't helped a bit. I get some comfort from the donations I suggested our family and friends make to PSC Partners, but I continue to live a now lonely nightmare---missing the other half of my heart. I wish you all better luck! Eppie Convel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 Dear Eppie,My heart goes out to you!What a wonderful comfort you must have been for Stan. I'm sure his journey was easier with you by his side.Your story keeps me motivated to work for Partners to change, not accept, the future of this disease.The irony you point out is tremendous.I'm so sorry that you and Stan got caught in the worst catch 22 there is.May Stan rest in peace and may his spirit help you smile again as you rebuild your life.You have lots of friends here.Please think of us when you feel lonely and know that we are here for you.Lee Stan finally lost the battle with PSC on Mar. 6. We played the Catch 22 game for 7 years--not morbidly sick enough to get a liver and finally so sick that Hospice (thank goodness for their care!) was the only recourse we had! He was diagnosed (at a very fit age 70!) in 1999, evaluated for transplant in 2003 and placed on the list in San Diego, CA that year. Low MELD of 7--which was never changed, despite continuing decline from that point on. Evaluated in 2004 at Indiana Unversity Hospital and failed to make their list--not nearly morbid enough! The whole procedure is so ironic! I was his life partner for the past 34 years as well as his caretaker throughout these last terrible months. We walked this slow death march together and just kept plodding along, somehow ever hopeful that he'd get sick enough to reach the brass ring! A nightmare journey! You'd think that with all this time to get ready for the terrible day, I'd be able to handle it with less pain---but it hasn't helped a bit. I get some comfort from the donations I suggested our family and friends make to PSC Partners, but I continue to live a now lonely nightmare---missing the other half of my heart. I wish you all better luck! Eppie Convel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 I am so sorry for your loss. This once again illustrates how unfair the MELD system is for people with PSC. Martivel2eite wrote: Stan finally lost the battle with PSC on Mar. 6. We played the Catch 22 game for 7 years--not morbidly sick enough to get a liver and finally so sick that Hospice (thank goodness for their care!) was the only recourse we had! He was diagnosed (at a very fit age 70!) in 1999, evaluated for transplant in 2003 and placed on the list in San Diego, CA that year. Low MELD of 7--which was never changed, despite continuing decline from that point on. Evaluated in 2004 at Indiana Unversity Hospital and failed to make their list--not nearly morbid enough! The whole procedure is so ironic!I was his life partner for the past 34 years as well as his caretaker throughout these last terrible months. We walked this slow death march together and just kept plodding along, somehow ever hopeful that he'd get sick enough to reach the brass ring! A nightmare journey!You'd think that with all this time to get ready for the terrible day, I'd be able to handle it with less pain---but it hasn't helped a bit. I get some comfort from the donations I suggested our family and friends make to PSC Partners, but I continue to live a now lonely nightmare---missing the other half of my heart.I wish you all better luck!Eppie Convel Yahoo! Travel Find great deals to the top 10 hottest destinations! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Eppie, I'm so sorry to hear of Stan's passing. I wish I had some adequate words, but I don't. Please know that we are all praying for you... Peace, Deb in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Iam so sorry for your loss. There are no words to take the pain away that you must be feeling now. just know that we are all here to listern to you if you need a shoulder to cry on. I sending loads of hugs to you to help you though this most horriable time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 My posting below was supposed to say “with out pain” LINDA From: [mailto: ] On Behalf Of llduq Sent: Saturday, March 18, 2006 4:50 PM To: Subject: RE: Stan Breite's death Eppie, I am so sorry to hear of the loss of Stan. I have to believe that he is now at a place of peace and with out. I will pray for you and others who loved Stan. Being the parent of a child with PSC I thank you from the bottom of my heart for suggesting donations go to PSC Partners; it gives those of us still struggling with this terrible disease hope. LINDA (Mom of Suzanne, 16; IBD 1/04; PSC 3/04) From: [mailto: ] On Behalf Of vel2eite Sent: Saturday, March 18, 2006 1:11 PM To: Subject: Stan Breite's death Stan finally lost the battle with PSC on Mar. 6. We played the Catch 22 game for 7 years--not morbidly sick enough to get a liver and finally so sick that Hospice (thank goodness for their care!) was the only recourse we had! He was diagnosed (at a very fit age 70!) in 1999, evaluated for transplant in 2003 and placed on the list in San Diego, CA that year. Low MELD of 7--which was never changed, despite continuing decline from that point on. Evaluated in 2004 at Indiana Unversity Hospital and failed to make their list--not nearly morbid enough! The whole procedure is so ironic! I was his life partner for the past 34 years as well as his caretaker throughout these last terrible months. We walked this slow death march together and just kept plodding along, somehow ever hopeful that he'd get sick enough to reach the brass ring! A nightmare journey! You'd think that with all this time to get ready for the terrible day, I'd be able to handle it with less pain---but it hasn't helped a bit. I get some comfort from the donations I suggested our family and friends make to PSC Partners, but I continue to live a now lonely nightmare---missing the other half of my heart. I wish you all better luck! Eppie Convel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Dear Eppie I just read your email. I am not on too much these days. It brought tears to my eyes to hear of your loss. It is never easy, not matter how much time you have. Please know that my thoughts and prayers are with you. Stan was very fortunate to have you as a partner and caregiver for so many years. I hope that you find comfort in your memories of happy times together and know that he is watching over you. Please take care of yourself. Diane (wife of Steve) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Dear Eppie; I am deeply saddened to hear of Stan's death. My heart goes out to you. Please accept my deepest sympathies. I recall talking with Stan online about his visit to IU in 2004, and I'm sorry now that I didn't come to see him during his transplant evaluation there. He was a great member of the support group, and always had good advice even though he was going through his own weary battle with PSC. It is comforting to know that you were such a pillar of support to him throughout this struggle ... God bless. Dave (father of (20); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Dear Eppie, I'm so sorry for your loss! Most of us here are familiar with your pain, as we have lost members close to us, being Stan's life partner for 34 years has to entail heartache and loss equivalent to that of losing a part of yourself. Please know that I am praying that God eases your pain! Big hugs to you in your time of grief! (MO) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 We are also deeply saddened to hear of Stan's death. I know you had quite a few conversations with Lonnie both before and during your travels to IU Med Center for qualification. Our thoughts and prayers are with you, Eppie. Kathy wife of Lonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 I wonder if anyone has quantified the apparant bias in the UNOS scoring against people with PSC? It seems it would be easy to tell if the system indeed is unfair to patients with PSC by comparing the death rate of PSC patients while waiting for a transplant compared to those with other liver diseases. I guess I am just wondering if this unfairness is real or perceived? Regardless, my condolences to Eppie for your loss. A loss of one patient who would otherwise survive with a transplant is one too many. in Seattle UC 1991, PSC 2001 > > I am so sorry for your loss. This once again illustrates how unfair the MELD system is for people with PSC. > Marti > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 ((((((((((((((((Eppie)))))))))))))))))))) I haven’t been on this group long...but my heart goes out to you. I am praying for you. Beth Hunt " But without faith it is impossible to please him: for he that cometh to God must believe that he is, and that he is a rewarder of them that diligently seek him. " Hebrews 11:6 When someone is in the dark, and you turn the light on it will hurt their eyes at first. They will squint and try to cover their eyes. But they will open their eyes and love the light because now they can see ~ In contrast, if you ease the light on they will still love the Darkness, and the Light won’t bother them anymore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Dear Eppie, Our story sounds much like yours. My husband Sam waited seven years as well for a liver transplant at Stanford. In August 2002 he was finally number two on their transplant list only to find out he had metastatic cancer the very next week. He had one round of chemo and died at 52 in April 2003. The stories I can tell. He was diagnosed at 16 with USC, removal of large colon (ileal anal pullthrough 1991). Diagnosed 1984 PSC, disability 1995 when placed on the transplant list. I know the whole catch 22 thing. Sam felt horrible all those years yet was told until he was number two that he just wasn't sick enough. My suggestion to anyone with PSC is to go to a facility that understands PSC and is willing to be aggresive with the disease. Stanford refused to do a living donor transplant. I could go on and on. I am sorry for your loss. For me it will be three years next month. It does become more bearable but it is still difficult. I wonder often what would have been had they been willing to just give him a chance at life with a transplant. Be gentle with yourself. It takes time. Blessings. Diane > >Reply-To: >To: >Subject: Stan Breite's death >Date: Sat, 18 Mar 2006 18:11:18 -0000 > >Stan finally lost the battle with PSC on Mar. 6. We played the Catch >22 game for 7 years--not morbidly sick enough to get a liver and >finally so sick that Hospice (thank goodness for their care!) was the >only recourse we had! He was diagnosed (at a very fit age 70!) in >1999, evaluated for transplant in 2003 and placed on the list in San >Diego, CA that year. Low MELD of 7--which was never changed, despite >continuing decline from that point on. Evaluated in 2004 at Indiana >Unversity Hospital and failed to make their list--not nearly morbid >enough! The whole procedure is so ironic! > >I was his life partner for the past 34 years as well as his caretaker >throughout these last terrible months. We walked this slow death >march together and just kept plodding along, somehow ever hopeful >that he'd get sick enough to reach the brass ring! A nightmare >journey! > >You'd think that with all this time to get ready for the terrible >day, I'd be able to handle it with less pain---but it hasn't helped a >bit. I get some comfort from the donations I suggested our family and >friends make to PSC Partners, but I continue to live a now lonely >nightmare---missing the other half of my heart. > >I wish you all better luck! > >Eppie Convel > > > > _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
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